Thinking about Rituxan

[hmcollin]

18 months ago I was diagnosed after a second sinus surgery and the pathology noted "granulomas" and I was sent for bloodtest and it came back as Pr3 high as well as C Anca titer 1:40 (High). I had night sweats, joint pain, bloody nose, crusting, ear pain etc. My ENT sent me to a Rheumy and I started on Pred. & Methotrexate. 10 months in I switched to Imuran 175 mg. 9 months have gone by and I still don't feel back to normal. I still have swelling in my eyes and inflammation in my sinuses and feel really tired some days. I have moved down to 9mg of prednisone daily and if I move down anymore I get more blood in my daily sinus rinses. I have bloodwork done monthly and no issues with lungs or kidneys and my bloodwork is stable. I guess my question is" Has anyone ever went to Rituxan without having kidney or lung involvement?" My rheumy keeps looking for some hard data but I have kept up with this site religiously and I don't feel like I'm in remission at this point. He is willing to let me take it next month, but I just wanted to see if anyone else has ever taken it with no lung or kidney involvement? Thanks, This site has kept me informed over the past 18 months.

[Jaypfei]

When I was initially dx'd I had ear, sinus and lung involvement . By the time I was put on Rituxan I only had ear and sinus involvement. Rituxan has been an amazing drug. It took from Dec 2012 till my last dose Jan 2014, but my new rheumy said that my labs were good and I heard the words.... " drug induced remission,"for the first time since Dx's.
Best of luck to you on starting Rituxan . :)

[me2]

I don't know what the full criteria is for a doctor choosing Rituxan but I can answer your question " Has anyone ever went to Rituxan without having kidney or lung involvement?" -- Yes, I have had several infusions of Rituxan and I have no kidney or lung involvement. I have other problems- but not those two. (Central Nervous system, tracheal stenosis- dilated three times, eye involvement, small strokes, etc)

It sounds like you have symptoms enough to warrant trying Rituxan. Your physician sounds a bit unsure of treatment thus leaving the choice up to you. If it were me I would have the doctor consult with one of the fantastic doctors available for consultation through the Vasculitus Foundation. They are all very good , I went to see Dr Langford in Cleveland when I felt my doctors were not entirely on top of things.
It was a great choice for me.

I have a different Rheumy now that I think is more on top of things. If I were in doubt I would have him consult with Cleveland Clinic- just talking with any of the good docs there would be ok with me.

And congrats Jaypfei. That is just fantastic news.

[Alysia]

I dont have kidney's involvment, thanks God. my lung involvment was mostly in the acute onset, and after that what's left is dry coughing and some SOB. but I did got rtx because of deteriorating state of my nose, ears, joints, red eyes and colon. only after the rtx, for the first time, my c-anca and pr-3 became negative after years of only positive. please see this: http://www.wegeners-granulomatosis.com/forum/medication/3159-rtx-outcomes-my-list.html

[hmcollin]

Thanks for the info. I will start Rituxan in a couple of weeks. My rheumy is always looking for some hard data to warrant an increase or change of meds. I went this morning and if you have heard the news the Ebola Drs. from Africa are returning to my hospital in Atlanta (Emory University). I wish them the best and know that it is safe but it is amazing that I am going to be suppressing my immune system and a few floors down they are treating Drs. with a terrible disease. Thanks again

[bdawg212]

Good luck with the infusions. I had four in a row, two weeks apart, and never had a bad reaction of any sort. However, it doesn't seem to be working for me. I don't have kidney or lung involvement anymore either, just sinus, but since methotrexate was ineffective and I didn't want Cytoxan, the infusions were my next choice. I hope you have good insurance, because they are ungodly expensive. (One bag for one infusion is roughly $24,000, and that doesn't include any other infusion expenses.) There's also a copay card you can get from the company. That has taken about 90%+ of my cost away. Go to racopay.com for the details.

Hope it works!!

[MikeG-2012]

I still have swelling in my eyes and inflammation in my sinuses and feel really tired some days. I have moved down to 9mg of prednisone daily and if I move down anymore I get more blood in my daily sinus rinses. I have bloodwork done monthly and no issues with lungs or kidneys and my bloodwork is stable. I guess my question is" Has anyone ever went to Rituxan without having kidney or lung involvement?"

My sinuses were the indicator that I was having a flare up last year. I never had any blood in sinuses until I started flaring up. My ENT finally walked up with me to the rheumy office and told the rheumy that he had to do something. So after a chest x-ray, we found more lesions. That was my start of RTX for maintenance. I'm still on 150mg of Azathioprine

Are you crusting up, or just bleeding? If there are crusts, that might be an indication that the wegs is still active in the sinuses. If no crusts, is it just dry up there? I don't have too much trouble with dry nose the way I irrigate my sinuses (3 liters of saline two times a day with a waterpik). Irrigating like I do also helps, even if there is crusting. When there was massive crusting, I used to run 3 liters, get a few out, and still felt like there were more ready to come out. So, I would make another 3 liter batch, rinse some more, and repeat if necessary.

In my opinion, with this disease, one 8 oz NeilMed bottle a day is not nearly enough rinsing if you have sinus involvement.

[annekat]

In my opinion, with this disease, one 8 oz NeilMed bottle a day is not nearly enough rinsing if you have sinus involvement. I agree with this wholeheartedly! I do not do the extensive rinsing, with the water pik and all, as you do, although it sounds great. Since I have lost the bony structures of my nasal cavity, there is less mucus collecting in there, and no crusting to speak of, but the rinsing is still necessary. I use the NeilMed bottle, but just doing it once is pretty pointless. That does little more than start to loosen stuff up. I will usually do at least 3 or 4 rinses and often more, up to 6 or 7, if I still feel like there is stuff in there. I thought I read there was a bigger NeilMed bottle available, and I would like to invest in a water pik with nasal attachment someday. Can't do it right now, maybe in the spring or summer. But my current problems in that area are pretty minor. The big chunks I used to get when my nasal and sinus structures were still intact are a thing of the past. For people with those kinds of chunks, crusting, and all that, I think you could really benefit from something better than the 8 oz. NeilMed squeeze bottle.

[me2]

Good ideas. I will pick up FOUR Neil-med bottles next time I am at Costco. I do often rinse before taking a shower and then again after. This helps get things out.

Maybe I could put a couple of gallons of saline in one of those sprayers from the garden center and use that?

[annekat]

Good ideas. I will pick up FOUR Neil-med bottles next time I am at Costco. I do often rinse before taking a shower and then again after. This helps get things out.

Maybe I could put a couple of gallons of saline in one of those sprayers from the garden center and use that? I don't know about the garden sprayer, Kirk, but at least you could heat up the 4 NeilMed bottles at once instead of having to stop and repeat it each time. Yeah, the shower idea is good; also inhaling steam from a bowl of saline or mint infused water can really help to loosen things up before rinsing, and is relaxing, too.

I've noticed if I only rinse twice, then I'll go somewhere and the loosened-up stuff will start wanting to come out while I'm driving or worse yet, when I'm out in public. Well, this thread is supposed to be about Rituxan... for any newbies here, there are lots of threads in the archives about sinus rinsing.

[drz]

I agree with this wholeheartedly! I do not do the extensive rinsing, with the water pik and all, as you do, although it sounds great. Since I have lost the bony structures of my nasal cavity, there is less mucus collecting in there, and no crusting to speak of, but the rinsing is still necessary. I use the NeilMed bottle, but just doing it once is pretty pointless. That does little more than start to loosen stuff up. I will usually do at least 3 or 4 rinses and often more, up to 6 or 7, if I still feel like there is stuff in there. I thought I read there was a bigger NeilMed bottle available, and I would like to invest in a water pik with nasal attachment someday. Can't do it right now, maybe in the spring or summer. But my current problems in that area are pretty minor. The big chunks I used to get when my nasal and sinus structures were still intact are a thing of the past. For people with those kinds of chunks, crusting, and all that, I think you could really benefit from something better than the 8 oz. NeilMed squeeze bottle.


I have a Grossan Hydro Pulse machine
HydroMed (http://www.hydromedonline.com/hp.html?gclid=CMPg7J2rjMMCFQUSMwodyyIATA)
which I guess is a an upscale Water Pik type machine for rinsing but seldom use it as i prefer the Neil Med squeeze bottles. I can control the amount and force of the rinse easier with the squeeze bottle. I am rinsing several times a day now as I have had more blood and gunk in my rinses but in the past when things were better I got by with a couple rinses a day as they were mostly clear.

I am wondering about which additives might help clear out the sinuses better when they seem infected. I have read about adding hydrogen peroxide, apple cider vinegar, betadine, a drop of liquid soap, tea oil, and other things to help clean and disinfect the sinuses.

What have people found helpful?

[me2]

Something I add , depending on how great my need, is Alkalol.
About Us (http://www.alkalolcompany.com/about-us/#.VLKoQSvF-So)

I discovered it a long time ago and I see now the VF includes a sheet about it in the information packet.

I would use it every time but only use it on occasion to keep the expense down. I used to buy it by the case at my pharmacy and get a discount.
There is another wonderful product that is similar but more expensive- Glycothymoline. I save it for when I am really not doing well and want a change. The Official site of Glyco-Thymoline :: Mouthwash & Oral Hygiene :: An All Natural Alkaline Cleansing Solution for a Refreshing, Clean Feeling (http://glyco-thymoline.net/)

[MikeG-2012]

I am wondering about which additives might help clear out the sinuses better when they seem infected. I have read about adding hydrogen peroxide, apple cider vinegar, betadine, a drop of liquid soap, tea oil, and other things to help clean and disinfect the sinuses.

What have people found helpful?

Live used a 1% Johnson&Johnson baby shampoo. That works to sooth the sinuses when they are raw. Also Alkolol. I use that daily.

[annekat]

Alkalol is good. I only buy it when I can afford it, although it is only like $10 a bottle (maybe more now) and a little can go a long ways. A small amount in the rinse solution gives a nice soothing feeling and is supposed to be a "mucus solvent". Too strong a solution can be harsh, so experiment. The ingredients are all natural. Info can be found online. It's on the shelf at major pharmacy chains. I also tried the baby shampoo when it was talked about on here and found it to help a great deal when the mucus was being stubborn about loosening up. Just a few drops in your nasal rinse solution. It sounded weird at first but really wasn't.

[mrtmeo]

I have a Grossan Hydro Pulse machine
HydroMed (http://www.hydromedonline.com/hp.html?gclid=CMPg7J2rjMMCFQUSMwodyyIATA)
which I guess is a an upscale Water Pik type machine for rinsing but seldom use it as i prefer the Neil Med squeeze bottles. I can control the amount and force of the rinse easier with the squeeze bottle. I am rinsing several times a day now as I have had more blood and gunk in my rinses but in the past when things were better I got by with a couple rinses a day as they were mostly clear.

I am wondering about which additives might help clear out the sinuses better when they seem infected. I have read about adding hydrogen peroxide, apple cider vinegar, betadine, a drop of liquid soap, tea oil, and other things to help clean and disinfect the sinuses.

What have people found helpful?

When my mom has a cough, I have her use 20ppm true colloidal silver (not ioninc) and the cough stops, but I don't know if it would help weg's or not.

[annekat]

When my mom has a cough, I have her use 20ppm true colloidal silver (not ioninc) and the cough stops, but I don't know if it would help weg's or not. I've heard of the colloidial silver but haven't tried it. Some proponents of traditional medicine might discount it, but I don't have a bias against the possibility of it working. From what I've heard, I'd think it would help any infections or irritated tissues whether the person had Wegs or not. One person told me it could help cold sores, but again, I haven't tried it.

[mrtmeo]

I've heard of the colloidial silver but haven't tried it. Some proponents of traditional medicine might discount it, but I don't have a bias against the possibility of it working. From what I've heard, I'd think it would help any infections or irritated tissues whether the person had Wegs or not. One person told me it could help cold sores, but again, I haven't tried it.

Colloidal silver can kill alot of different pathogens, but sometimes it needs to be at a much stronger concentration.
I know it stops mrsa on the skin, but it will not get rid of mrsa systemically when it is colonized.
Iodine can kill a vast amount of pathogens as well.
With cold sores, vitamin can help slow the virus down, but when ever I got a cold sore, just getting my vitamin D levels up, resolved them immediately.
Some people find vitamin C and Lysine work for cold sores.
I've seen the best results with getting the D levels up, but not sure for those on immune suppressants.
Everything changes when immune suppressed.
My mom has not had a cold sore in a few years since getting her D levels up, but she did get some outbreaks of herpes on her nerves which vitamin C took it away.

If anyone uses colloidal silver in a neti pot, do not mix it with salt or anything else except distilled water.
It's best to just squirt the colloidal silver in the sinuses and rinse if it is too irritating.

[drz]

Iodine can kill a vast amount of pathogens as well.
.

Would it be safe to add a drop or two of iodine to a nasal rinse? Most of the these additives are labeled for external use only. I wondered about mouthwash like Listerine?

[annekat]

Would it be safe to add a drop or two of iodine to a nasal rinse? Most of the these additives are labeled for external use only. I wondered about mouthwash like Listerine? My gut feeling is that a couple of drops of either of those wouldn't hurt. A mouthwash will get back into that area, anyway, via the back of the throat. Too much would likely be irritating. I have added a few drops of herbal tinctures in the past and had no problem. I remember using goldenseal, a natural antibiotic, and something else, might have been yerba santa or a lesser known one of the "yerbas". I know that yerba santa, which may be gathered wild in California, is known for helping respiratory issues. I don't know much about iodine, but would imagine a couple of drops would be OK.

[mrtmeo]

Would it be safe to add a drop or two of iodine to a nasal rinse? Most of the these additives are labeled for external use only. I wondered about mouthwash like Listerine?

Hi Drz,

* Don't use iodine if you have any allergy to it.

I used Lugol's 5% solution in a ratio of 1:100 parts distilled water.
I used 1 tsp lugol's 5% solution in 2 cups distilled water.
In a neti pot, I added the iodine water and 1/8 tsp baking soda, so that it wouldn't sting.
This killed off the colonized MRSA my mom had.

I have not seen any clean iodine products on store shelves, but if you know a real pharmacist, they can make you up some lugol's 5%.
(Do not use iodine tincture because this is in alcohol)

Otherwise, I buy mine from jcrows.com here
J.CROW'S Lugol's Solution 5%, 1oz., Value Price Includes Shipping (http://www.jcrowsmarketplace.com/1ozlugolssolution5valuepriceincludesshipping.aspx)

[me2]

I have ordered the Lugol's to have it on hand. Thanks.

[mrtmeo]

I have ordered the Lugol's to have it on hand. Thanks.

The Lugol's 5% solution in each VERTICAL drop is about 6.25 mg's of iodine/potassium iodide (2.5 mg iodine, 3.75 mg potassium iodide).
This combo works the best because the body's tissues use both iodine and iodide.